Sunday, June 12, 2022

Friday, October 20, 2017

A Busy Week And A Fun Family Day

Life has been rushing on by at an alarming pace. I think homeschooling makes the days go by faster since our mornings are devoted to school. Last Friday the children and I combined school work and apple sauce making. Kind of makes a complicated, sticky mess but we were finished with both jobs by lunch time thanks to willing helpers.

Kiana, Joseph and Lia kept the sink filled with apples and ran errands for me.

Thanks to COBYS and SWAN we enjoyed a day at Cherry Crest Farm yesterday. The weather was beautiful and the children loved having dad along and I loved having another adult along to keep an eye on everyone.

Feeding the goats

Lia and Joseph standing on top of the straw tunnel.

Inside the straw tunnel.

Lia made a new friend!

Crawling on the "spider web."

Hang on, Kiana!


Strasburg Railroad goes through the farm.

Dean had to go in to work for a few hours. When he came home we went to Plum Creek Farm for ice cream. It was too cold to be eating ice cream but we really wanted to try their Pumpkin Spice ice cream so we endured the shivers! The ice cream was delicious!

Lia skipped the ice cream and ordered french fries instead

October is "dentist month" at our house. Joseph had an appointment on Tuesday and I had one on Wednesday - a make up for last weeks missed appointment. You can read about that episode here: An Almost Tragedy.

Taking selfie's with mom's phone to pass the time.

When mom and dad stay up till all hours of the night calming a sibling, you just might fall asleep on the couch! 

We are having some good days with Kiana, although the hard ones are still in the majority. Someone mentioned the other Sunday that I stayed in the service all morning, something that hadn't happened for months thanks to Lyme. That comment was a good reminder that things are getting better and I need to focus on those times. Today is Kiana's 10th birthday. I will admit I was apprehensive because birthdays are major triggers for our children. However we have had only one "episode" this morning, leaving me feeling grateful. Now I need to go bake a cake and wrap a birthday gift!

Thursday, October 12, 2017

An Almost Tragedy - No Cause And Effect - Living With FASD

What a morning! I had a dentist appointment to get my teeth cleaned and thought since it wasn't going to take long, I would leave Joseph home with Tristan. They had their school work to do and typically if it is just the two of them, they act like men and do fine.

When it was time to leave for my appointment, Tristan was outside helping someone who had stopped in, so I told Joseph to grab his boots and get in the explorer. I planned to take him out to Tristan where he could sit and watch what he was doing. Except that Joseph didn't have any socks on and he NEEDS socks. I told him he would be fine this time but he screamed and kicked the explorer door till it rattled saying it wouldn't be fine! I drove back to the house instructed Kiana to run inside and get his shoes so he could go along to the dentist. That infuriated him and as we were going down the drive he opened the door and tried to jump out. I quickly pulled over and turned on the child safety lock (he never sits beside the door for this, and other reasons). As we were going down the road he threw his shoes at me and declared he will not go inside with me. My brain finally kicked in and I realized that I needed to cancel my appointment otherwise we would have a very unpleasant scene at the dentists office. I could envision police, CYS and all manner of unpleasant things.... paranoid? Much!

When he realized we were turning around, Joseph thought I could just take him outside to Tristan and when I said I won't, the rage came back with a vengeance. So I am back to being a stupid, old lady who is mean and wants to mess up his life. I made myself a cup of cappuccino and am sitting here regaining my equilibrium.

I told Joseph that if he would have jumped out the door, I would have drove over him and he could have died. He looked at me and said, "I don't care, I wanted to go with Tristan!" No cause and effect...from now on he sits in the back or the safety locks are on at all times!

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Monday, October 9, 2017

When Parenting Is A Struggle - Living With FASD

Sometimes I long for Joseph to be normal, if for no other reason than for my own selfish desire to no longer have to have my brain always working overtime to keep him safe and regulated. I get so tired of parenting a child who will never grow up to be independent, a child whom I love but who exhausts me daily with his inability to follow directions, who has the ability to drive his siblings up a wall with his silent harassment.

One child recently said, "I wish Joseph would just act normal!" Dean replied, "He isn't "normal" like you and I, so how can he?" What makes it really hard is that it looks and sounds like he has it all together, but his actions show there are some major disconnects going on. 

I get tired of constantly directing, redirecting and then following up only to find, he still didn't follow through with what he was told to do. I know it is a processing problem, but it looks and feels like defiance....and he is smart enough to use this as an excuse for times when he doesn't want to do a chore.

Everywhere we go, we have to make sure we have a place for Joseph, will it overstimulate him, will there be a crowd of people, will the people understand and accept that we have firm boundaries for him for a reason? A simple lunch away set off an hour of screaming, throwing blocks, shoes and toys and ended with new dents in the walls. 

I get so weary of him riling his siblings just to get a response out of them. Only to go into a rage when they get upset because, "I can't play with the others and I have such a boring life!"

I feel so smothered by his need to always have Dean or I by his side to guide him through each moment of each day only to have our vigilance undone by a moment's inattention on our part.

I get tired of being screamed at, lied to and manipulated then having to figure out if he was accountable for his actions or if his brain was on overload and he was unable to control himself. Regardless of the reason, I feel the same frustration but I have to keep stuffing it back down because if he senses I am upset, he escalates.

And underneath is fear because he is only 9 but some day in the not so distant future he will be bigger and stronger than I am. Then what? Who is going to physically remove him when he becomes overstimulated and begins tossing things? Who is going to keep him in his room to calm down? Who is going to keep his siblings safe? Who is going to restrain him when his anger gets out of control? 

I know all about the dysmaturity, processing disorders etc behind the actions but when you live with a someone who appears to intentionally irritate and provoke his family, it can be very hard to show grace. I thought we must be unique in this problem until I joined FASD support groups and found that this is often a universal struggle for families. I often feel guilty for struggling in this area, after all it isn't his fault, he didn't choose to be this way, but I find continual stuffing of ones emotions isn't profitable either. 

What do you do when you feel smothered and respite is not an option because no one understands the need to maintain your child's boundaries to the full extent? 

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Saturday, October 7, 2017

Claiming My Circus

October always brings back memories of Braden, as this is the month the ICPC paperwork went through and he could move to his new family. As time goes on we tend to forget how hard things were and grief on a new level sets in.

I was feeling rather defeated yesterday so I burned some candle's to brighten the day.

Tristan gave this candle for my birthday

Flowers from a friend

We have bunnies once more! They are cute when they are little but like all animals, they grow up and the cuteness disappears.

I bought a Go Fish game with the alphabet on the cards to help Lia with her sounds. Some days she can put sounds together and read words, other days they may as well be Greek.  I will admit seeing her on again, off again learning ability took some accepting because I know what is behind it.

Kiana had a rough week again. The other week she had a crisis and we realized we need to keep her talking to keep her from getting so low. Easier said than done as getting her to talk brings on floods of  tears and rages. We did pretty good for a few days then slowly slacked off and guess what happened? Down she went! It was building up all week and threatened to erupt on Thursday but we went to Grandma for lunch which forced her to get on top of things. Yesterday she spent the day huddled in her blanket because I couldn't get her to talk. Because of her issues with me as her mom Dean can get her to talk much better than I can. In her mind, unreasonable though it may be, I am the source of her troubles. Last Saturday it took till midnight till she finally gave in and told us what we really going on. Last night it only took a little over an hour so maybe we are making a little progress! She keeps saying, "I wish I could feel good again, I want to be like other girls!" 

Kiana had an appointment with her Lyme doctor on Friday and she said she had recently attended a Lyme Summit where they mentioned that the essential oils oregano, cloves and cinnamon have, in some people, suppressed Lyme even more than antibiotics. She said there is no scientific studies out to prove it but she felt it was worth a try, especially since those oils won't cause any harm. We are waiting for the results for the coinfection tests as I failed to include some info which delayed the results. Was so frustrated with myself! 

Joseph has been reacting to Kiana's decline with meltdowns of his own. Sometimes when they are both going off at once I wonder who's circus I stepped into. :) Tristan keeps saying he feels sorry for me (most of their rage is directed towards me) I told him that I don't take it personally as I know they are letting out their pain in the only way they know how. He can't understand how I am not offended by the things they yell at me and I have a hard time explaining why it would hurt if he said the things they say but when they tell me I am a stupid old lady, I just brush it off and wait for the hug I usually get when the storm has passed.

I have learned (or am learning) to embrace the circus and joyfully claim the monkeys!

Tuesday, October 3, 2017

Sibling Relationships - Living With FASD

Like everyone else, people with FASD long to be loved and accepted. Due in part to all the trauma our family has gone through over the years, Joseph and his siblings have a strained relationship. They endured trauma in their bio homes, then secondary trauma in our home due to RAD and FASD. The secondary trauma, cemented their thinking that our home is not safe. Obviously mom and dad were not strong enough to keep them safe because things happened to intensify their fear and pain even while mom and dad were saying, "You are safe now." 

Joseph's actions are similar enough to his brothers' that his siblings are triggered even when he means no harm. Because of his inability to read social cues, Joseph often steps into a situation and causes more chaos. It looks like he is intentionally antagonizing his siblings, when in reality he is just trying to help. Joseph has weak core muscles so he isn't good at playing physical games, while slow processing speed makes him an easy opponent at board games. Play is usually where children build relationships. The above reasons plus Joseph's lack of self control make that nearly impossible.

With all this stacked against him, he has a hard time building positive relationships with his brother and sisters. He wisely thought up of a plan. He would be super helpful, which is a good idea except that FASD once more got the upper hand. For instance, when he wants to open the door for someone, he pushes past them and then proudly holds open the door. That doesn't go over well with temperamental siblings! If I drop something, he will drop his book and come running to pick up the fallen object, tripping over his feet in the process. He tries to quickly clear the table all by himself but drops dishes because he carries too many at one time, despite repeated reminders to carry one plate at a time. Sometimes I feel sorry for him and other times I need to remind myself to be empathetic. If he would do what he is told to do instead of forever rushing in and trying to help, life would be so much easier for everyone. The problem is, how do I explain that to him? He melted down the other day because, "I was just trying to help and now everyone is cross at me!" 

We were at a loss as how to help him until Dean struck on a brilliant idea, "You need to ask before you try to help people." He told Joseph. "Sometimes people don't need help and sometimes when you try to help and the person doesn't want help it just makes them grumpy." 

The flip side is his siblings. In reality they should be the one's who are showing grace. However the whole trauma thing discolors every situation, plus someone with Neuro Lyme isn't exactly prone to graciousness! Sometimes I think perhaps we should begin family therapy to work through some of these issues, but Kiana wouldn't be able to process much, neither would Lia and Tristan isn't at the age where family therapy would appealing. Maybe I am just taking the cowards way out. Have any of you tried it? If so, what did you think? We went for a few sessions around the time Braden left but our hearts were so broken and bruised from the past years that it wasn't very beneficial.

And so, that is the current situation at our house, trying to teach our children how to have good relationships when the odds are stacked against them!

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Thursday, September 28, 2017

If You Loved Me You Would Let Me Do What I Want! - Life With FASD

With Fetal Alcohol, the difference between what they know and what they can do is the disability. They know alot, but because of deficits in their executive functioning it's hard to put thoughts into action. - Jeff Noble

This is true for Joseph in many area's, except for the, "I want to build something," area. He knows what he wants to build, he knows how he wants to build it and he can describe in great detail how he would do it. The problem is his idea's won't work because he is missing key points.

He wants to build a go cart. In his mind all he needs is wheels, a seat and the pedals from his bike. He would hammer it all together and he would have an awesome go cart. Except it isn't quite that simple, but we can't tell him that because in his mind it will work. So we have a meltdown because, "You are just being mean!" 

We have discussed helping him build a go cart, but there are a few problems. For one, he wouldn't be safe with one because steering, speed and pedaling require's more brain power than he can afford at one time. Two, he isn't safe with tools. He can use a hammer but in his mind if you let him use one once, he has free reign to use one whenever he wants. Trust me, Joseph with a hammer is asking for destruction! Don't ask how I know. Three: anything Dean helps him make will not turn out how he envisions which will bring on another meltdown.

Joseph wanted to play with his old bike so Dean left him take it to his play area (a small clearing in the woods where I can see him from my kitchen window). Our hope was that this would fill his intense desire to build something. He took the chain on and off and pretended the bike was his plow. That was fine and kept him occupied for a few weeks, until he decided to take it apart. He got a piece of metal off the bike and bent it into a "knife" and was shaving Kobi with it. I took it, much to his dismay and frustration. Next he took the seat off, ripped it apart and used a piece of wire he found inside to make a tool. Another meltdown because I said he may not have wire as it is too dangerous.

This goes on day after day. Joseph isn't safe with anything metal, sharp or heavy (think of an 18 month old) and he is determined to find things to make his own tools since Dean won't let him use his. 

Yesterday he screamed and raged because he wants to build something "real" with dad's tools. I explained that Kiana doesn't use electric tools like my mixer or blender either, but of course he wasn't processing anything I said. "I feel like leaving here!" He yelled, Dean calmly replied, "There is the door." Sometimes giving him permission to leave is enough to deter him. Rather than leave, he stood there and screamed. Eventually Dean put him to bed where he thrashed, kicked and threw things until he ran out of steam. After awhile he came to me for a hug and asked, "What is wrong with me, my eyes are all red?" I told him that is what happens when he cries a lot. He hugged me and bounced off to bed, but later I heard him sobbing again. Poor boy, we don't know how to help him understand that he is only 9 and not physically able to do all the things he dreams up and besides most of his ideas won't work. He is certain we are just being mean and don't like him. "If you liked me you would let me do the things I want!" Is his thought process. Due to his FASD, trying to tell him otherwise is useless.

Today he is outside building a tepee, something that doesn't require tools, thankfully. However I expect another meltdown because he plans to live in it and it is too small for him to even sit inside.